Preparing for and communicating uncertainty in cancer genetic counselling sessions in Norway: an interpretative phenomenological analysis

Abstract

Risk communication is widely recognised as playing an important role in how individuals at risk of familial cancer understand and interpret their genetic status. To date, however, there has been little empirical investigation directed towards understanding how genetic counsellors themselves understand and actually deal with the challenges of communicating uncertainty of being identified with a gene fault in cancer genetic counselling sessions. In this article, we explore this relationship by using interpretative phenomenological analysis of semi-structured interviews with two genetic counsellors, prior to initial sessions with six patients in Norway, to examine whether the communication during consultations reflects what the genetic counsellors say they do. Analysis of the interviews demonstrates that the counsellors approach the patients’ experiences of their uncertain genetic status by drawing on past family history information and clinical experience as much as numerical risk information. Communicating the uncertainty in a manageable manner is described as a balancing act, involving being supportive while presenting realistic outcomes of the gene tests. Furthermore, our findings from the consultations show that although their clinical experience is emphasised, the counsellors do not explicitly invite patients to express how they themselves experience uncertainty in the context of their lives. While the counsellors provide the patients with balanced risk information, they do not explore how this uncertainty is experienced from the patient’s perspective. As such, our findings provide insight into an under-researched area within the field of genetic counselling.

Keywords:

• risk
• risk communication
• cancer genetic counselling
• uncertainty
• clinical experience
• communication approaches
• interpretative phenomenological analysis